Riding the Wave - Multiple Myeloma

A Caregiver's Inspirational Journey Through Cancer

Author's Note

I hope that this blog will inspire you and renew your resolve to overcome the fear, the pain, the overwhelming sense of dread that you may have found yourself in. If I can make you laugh, cry, or have some personal realization about your own situation, I will be incredibly pleased - for you.

"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." - unknown

Friday, March 19, 2010

I'm pretty certain that I met Dan when Dave and I were in Little Rock to begin our tandem transplant. Dave was fairly uncommunicative in those early days and I distinctly remember talking to a bright, handsome fellow sitting across from us. His wife Susan wasn't there as I recall, in the infusion center at the time. He was from Denver, he had had a transplant a couple of years before and now he was in LR. I remember that I liked him a lot and he was very upbeat and a great pleasure for me to chat with at the time. Anyway, I finally got caught up on "his story" last night and this morning. What a journey he and his family have been on! Its always amazing to me how different we all are and yet how much we are all the same. Dan has two beautiful daughters who were in college at the time and are now done and doing well. We have our two doing the same, with Hudson graduating this May and heading to Orlando to work his post graduate internship at Epcot.

So back to Dan, and his rock, Susan. He is currently at MD Anderson getting ready to undergo a mini allo transplant. The "mini" is the latest in the allo transplant, which is using stem cells from a donor, in this case one of his brothers. Leukemia patients typically get the allo as they have no cells of their own that can be collected. The allo has a much higher morbidity rate (30%) which is why it is a bit of a last ditch effort. But in Dan's case, his brother is a 100% match for him, and its the new "mini", and he's at MD Anderson, and he is an incredibly optimistic, strong person, with a tremendous support network. So this morning, I'm just feeling a strong yearning to write about Dan and give him all the spiritual support I can muster to get him through this new treatment he is embarking on and all the positive affirmations that he will do incredibly well.

Allos are the only true cure potential MM patients have at the moment. That's not to say that all the other treatment options we all battle with to make decisions about aren't promising and don't offer good outcomes. But the allo, when used, and if successful is by far the best opportunity to put MM firmly behind you. The mini is an effort to do the allo and mitigate the higher overall morbidity rates (from 30 to 10%). It has become a promising future path for those not able to get into a more stable disease presentation.

My thoughts and prayers to Dan and his wonderful family over these next weeks. I'm picturing him on the slopes, swimming, and riding his bike in beautiful Denver for years to come.

GO DAN!

Whatever "journey" you are on in life, you will meet people along the way that however brief the contact, who touch you, inspire you, make you laugh, give you hope, strengthen you... In the journey of Myeloma, which I am more familiar with, but I imagine it is true in other situations, you know that you are going to lose new friends along the way. You get attached and you grieve their loss, or you celebrate their triumph! Either way, was it worth it? I say, absolutely! You can't help but share their joys and their pains, as they do yours. That "look", of knowing its a good day or a rough day. The optimism of a good test result, or meeting with the doctor, the arrival of a loved one while you are far from home. Sharing the joys of someone being "sprung" and getting to go home! We all have a "story", and in them you see bits of your own and with that, there is understanding, hysterical laughter, tears, and most of all HOPE.

Thursday, March 18, 2010

Dave has been having uncontrollable and violent hiccups. We think its tied in with him being so profoundly constipated. But we aren't totally sure, except that when he can have a bowel movement the hiccups seem to go away for a couple days. So we "think" its gas building up with no place to go, but what do we know? Dave has several things working against him. The Myeloma causes constipation, as do the narcotics and the Thalidomide he is on to beat back the Myeloma. Add to that, general inactivity and poor Dave is just like a salmon swimming upstream on this. He is already so annoyed with all the pills he has to take and now he needs to add things to help him go to the bathroom. He keeps wanting to treat it like its and "acute" condition vs. a "chronic" one.

This is where, as a caregiver, and a wife, I get tremendously frustrated and aggravated with Dave. I tell him and tell him and tell him, what is going on, how to address it, how to handle it, and he doesn't do it, does his own thing, and then gets constipated and the hiccups return and we go round and round and round. I finally call Marilyn G., MD, and tell her what's going on and how frustrated I am with all of it. She gets Dave on the phone and "explains", AGAIN, what's going on and why he needs to be proactive and continual in addressing this issue. It works for a couple of days and then he goes back to "hoping" he won't have this problem, and of course does, and so it goes.

After I left for Maryland, my dear friend Jann (who has since passed away, sniff, sniff), was out in California and was spending time with Dave and Hudson. She went to one of the appointments with him (did I mention, I have THE most AMAZING friends!) and Dave tells some lowly office person that he has these violent and uncontrollable hiccups. She gets on the computer and says, "Oh, no problem, we can prescribe Thorazine."

WHOA!!!!!!!!!!!!

THORAZINE!!!!!!!

Thank god Jann was there! She knew, as I knew, that Thorazine was introduced in the 1950's as the miracle anti-psychotic that was dubbed the "Chemical Lobotomy". Geezus! Jann, stepped up and said, "Dave, you absolutely cannot take that!" The poor girl behind the counter was way too young to know this information. She's just punching into the computer and its spitting out the "approved" solution. Jann was calm, but direct with Dave. Of course she called me right away and we were both AGHAST on the phone and I was soooooooo glad she was there at that moment! As I mentioned earlier, I was finding out a lot of things, after the fact, and I have no doubt, Dave would have filled that prescription having no idea what it was originally known for. It was helpful though in getting him to opt for the colace, sienna, warm prune juice, etc.

"Thorazine Shuffle" averted!but the hiccups remain...

Eventually the hiccups would disappear, though issues with the constipation would continue and Dave's willingness to get ahead of it. So I don't know really, what was causing them. It could have been the Thalidomide. But again, they did disappear while still on the Thalidomide, so who knows with certainty what the cause was. We may have just gotten a better handle on the constipation and we were right all along...

Now do I really think had Dave taken thorazine he would have developed the "Thorazine Shuffle?" Was I simply freaking out about something I knew about this particular drug that was not appropriate? You know what? I don't care. I don't care if someone thinks I'm overreacting or not. It was a continuing EFFORT to educate Dave about health care, drugs, recovery, etc. His world and, arguably, mine, had been turned upside down. He had gone from no pills, to handfuls. He was scared, in pain, frustrated, uneducated, inexperienced, etc. I was 3,000 miles away and we had 27 years of marital baggage to plow through as we tried to deal with all of this.

The upshot of this was, and continued throughout, I felt that Dave needed to be very careful about HOW he was communicating these things to the medicos. If he tells them matter of factly so they know everything that's going on that's one thing. But if when he's telling them he is giving signals that he wants them to "fix it", man, they will, more pills, more prescriptions, more, more, MORE! As someone who has always worked for the simpler, alternative roots to things, this kind of approach is contrary to everything I think and believe. Why would you not take sienna, fibercon, and prune juice (ok I hate prune juice!) to proactively resolve the constipation and thus, the hiccups... but instead, tell the docs, and get a prescription like THORAZINE to handle it. I just can't think with that kind of rationale. And here is the other thing, in case you are wondering... the other stuff DID WORK! He just wouldn't stick with it. I would find every pill out of his box taken EXCEPT the sienna, fibercon, colace, etc. Then he would avoid answering my question about having a BM, and then whine about the hiccups, being constipated, etc. SCREAM! He's protesting, I get it. I really, really do. This is not fun. But I have issues too, and his noncompliance is beating me up and pushing me into a very unsympathetic, sarcastic attitude. (That marital baggage I was alluding too!) Or... is this simply the lessons I am to work on...

(Note: Some had expressed concerns about Dave taking stool softeners long term. I was told that your body can become dependent on them. I spoke to Dr. Marilyn G. about this and was told that is not the case with someone in a position like Dave where he has chemical reasons for the constipation. If he was constipated, but otherwise healthy, and was taking laxatives and softeners, then yes, that could become a problem. But when Dave got off the narcotics and the MM was better under control, he should be able to go back to normal on this... whew...)

There seemed to be a continuing struggle with the juxtaposition of the patient, the caregiver (aka, the wife), and the doctor! I'm not a doctor or a nurse. I struggle with Dave on my credibility and his willingness to take whatever is said by the docs/nurses as gospel. If it supports my view, fine, if it doesn't, then he is less likely to work with me on it. The docs/nurses, rightly stay focused on Dave, the patient. Its extremely frustrating. And yet, I can't lose my temper with him... he is very sick, its not OK for me to unleash my wifely wrath on him. Calm discussion and persuasion is the order of the day, but it is exhausting in terms of the emotional energy it drains from me. I can't emphasize enough how incredibly valuable my friends have been through this process. Jann was one of several. I was able to fully disclose and unload my difficulties and find sanity in the storm - always with a solution, humor, direction, focus, and always renewed and resolved to keep moving forward and know, without any doubt, we would get through this.The trick was, could we get through it in one piece, undamaged, stronger, better...

Monday, March 15, 2010

"It is so good to have the office come to life again! It felt like a house with a clogged drain on holiday with a lot of visitors, when you were gone... " My wonderful boss' email me to me upon my return.

So I've been home now for about a week. Closed on the house, back to work, packing, strategizing, planning, checking in on Dave and Hudson and on and on. Overwhelm doesn't even seem descriptive enough to describe the pressure I feel at different points in the day. Sometimes, being at work, walking the dog, chatting with a friend is a respite from all that is occurring. Sometimes, it just adds to it all. I've noticed I'm sighing a lot. Its been hard for me to catch up with Dave and Hudson with the 3 hour time difference on a regular basis.

Hudson has been taking Dave to his radiation treatments to help reduce the lesions on his T8, ribs and shoulder and thus give him a bit of relief from the pain. He has no fractures in the ribs which is good. We aren't totally sure he has lesions there either though. We're still struggling with what to ask. Its all so new and difficult to figure out. Its amazing how different and new this all is. And now with me in Maryland I'm not there to ask the questions when things come up. I hear about it all AFTER the fact. Sometimes I lose it and get really frustrated. Poor Hudson, doesn't know what to ask, its not really his job. Dave doesn't know what to ask or sometimes even how to assimilate all the information he does get. This is a whole new experience for him. And not a fun one.

I took care of my mother, Chris Hudson, who had had 5 cancers over 12 years. Each one was a fairly straight forward until the last cancer which was in her liver and then there was nothing presented to us to resolve it that was worth undertaking. She made the decision not do anything as it would afford her some decent quality of life for the months she had left. It was very hard for me, and even harder for my sister, to know that she had made this choice. It was the right choice, but it was still hard. I remember lying in bed the night I knew she was "done" and crying myself to sleep. I woke up with the resolve that it was "her journey". My role was to help her to have whatever experience she determined was best for her. THE HARDEST question I had to ask her in the car on the way home was where she wanted to die. I couldn't quite get it out like that, not that direct. Funny how that is. When I was in a class in college for my humanities credit, "Death and Dying", there was chapter I remember vividly entitled "Death Has Become Pornographic". What it was alluding to was the difficulty we had as a society to discuss death. We give it names, like "passed away", "kicked the bucket", etc. That in the old days when death was more commonplace, we didn't hide it away like we do now. The pornographic analogy was that we don't discuss that either. We know its there, we know its a part of people's lives, but we simply don't have conversations about it. It is a taboo subject for many. Even "knowing" this, it was profoundly difficult to open this line of discussion with my mother without completely falling apart. But I was brave, and with tears trickling down my face as I was driving her home, I asked, "Mom? What do you want to do? I mean, where do you want to be... in the hospital, at your house, my house, hospice?" We had a very tentative and cautious, but open, conversation about it. She wanted to be with me, but she was worried about the children who were 11 & 13 at the time. Then she recounted a personal story that just floored me and that I never knew...

When she was about 5 or 6, her grandmother was dying. They all piled in the car and went to her house. Adults were milling around in and out of the grandmother's bedroom, waiting, keeping vigil. The grandmother dies, they get her body removed from the house by the funeral home and then they put my mother in the grandmother's bed, alone, turn out the light and they all go to bed! My mother had tears running down her face as she was, with great difficulty, telling me this incident in her very young life. I said, "Ohhhhh Mom! That's horrible! You must have been absolutely terrified and frightened!" She only nodded. Then again, with difficulty she expressed her concern for my children and not wanting them to have any kind of experience like that connected to her or to death. I was even more resolved now that she would be with me. "Mom, first of all they aren't that young and secondly, I would never allow them to have an experience like that, you know that right?" She nodded. "Then its settled, you will be with us." (In case you're wondering... my children had an unbelievably enriching experience caring for my mother. For them, now, its as natural as the air you breathe, to care for someone you love.)

Chris (circa mid 1960's)

So my experience with her was a slow decline physically until she died. With Dave, it's one minute he's working, driving to and fro, taking business trips and so on - to WHAM! In the hospital, unable to move without great effort and pain, almost crippled beyond words. I have to help him up, help him put on his clothes, in and out of the bathroom, pretty much everything. With my mother, it was helping her to die, gracefully, painlessly and dignified. With Dave it's about SURVIVAL! Bringing him back from the brink instead of helping to go toward it. Its frightening to see him so profoundly impacted in an instant, much I guess like someone who has had a terrible accident or stroke. Its so abrupt and life changing, it sends you spinning.

Of course, now, I realize just how frightening all of this must have been for Dave. (I had a sense of it when it was occurring, but honestly, it was a luxury I didn't feel I could afford.) He can't get out of bed, he is in tremendous pain, he goes to the hospital by ambulance and he's told he has cancer. I'm sure right at that moment, he thought this is it, its all over, I'm a goner. I can totally appreciate how one could view it that way.My job became more about his mental game than the physical one. I knew he would get treatment, though I had no real idea what that would entail just yet. So for me it was, how do I get Dave from a posture of succumb to one of survive? How do I do this while being understanding and compassionate. How do I say, "COME ON BUCKO! GET WITH THE PROGRAM HERE!" in a soft, quiet, caring way. I'm thinking all of this and I'm torn between being angry AT him, scared FOR him and not even wanting to think about what this could all mean for me and our family. Our future, our lives... and feeling guilty for having ANY of these kinds of thoughts at all! The emotional pressure was incredibly profound.

Sunday, March 14, 2010

Well Hudson made it in from the east coast to take over the care of his father so I can leave the west coast and head back to close on the house, resign formally from my job (set a date), work out the details with my boss, pack the house (ARGH!), go to the going away party for Dave and I, and make the move (which should be sometime around mid to late July).

. . .

I am so very proud of our son. He was 22 years old and just finished his third year of college (out of five) and when I asked him if he could forgo the summer job hunting and come out and take care of his father instead, he said, "yeah, sure". I asked him how long it would take him to get his stuff out of the apt, in storage and so on and he said a few days. He pulled it all together in about 5 days.

A moment here to just talk about our children. I didn't know fully how they really felt about everything. I assumed (and hoped) that they were talking with each other. I know that at the time Montana felt very strongly that it would be OK. She felt this immediately. There was a calmness. Since I was able to tell her in person before I left, what was going on, it was very comforting for me to "feel" her energy as I recounted what had occurred up to that point. With Hudson it was a little more difficult because I had no choice but to tell him over the phone. Its not always easy to read people over the phone. On the surface however, he seemed concerned but confident that it would sort out. Later on in the saga, both children asked me what they could do. I told them:

"Live your life, do well in school, stay out of trouble, and try to handle your own problems as best you can."

It may not seem like much, but to me, it was HUGE. If I could focus all my energies on getting Dave stable and well, not knowing what was ahead of us really, except that it would be time consuming and fraught with hurdles - to not worry about the kids would free up a great deal of my energies. The last thing I wanted was for them to stop going to college, get depressed or whatever one does when hit with a trauma such as this. We were now 3,000 miles away from them on top of everything else!

They are both pretty resourceful, self sufficient kids. I raised them that way. I couldn't help it. I lost my father when I was just shy of 13. He rocked my world. He was my hero. When I was about 16 and coming out of the "fog" of losing him, I realized that he had taught me all I needed to know to live my life successfully. It was quite a moment. I still remember it very well, it was pivotal. Somehow I pulled myself together and began to really live at that point. When I had my children, I just very naturally taught them things very early in their life. It was not uncommon for adults to comment. When they were teenagers they would often complain to me about how so and so's mother does this or that for their kids! Oh well... later though, my son called me when he was in his second year of college and told me how his housemate was completely inept at taking care of himself. That his mother would come and get his laundry each week and take it home to wash, buy groceries and CLEAN HIS ROOM! I was incredulous of course, and I gently asked (as I couldn't tell yet if he was resentful or annoyed), "Do you want me to do your laundry or something for you?" He said no and then went on to concede that I had done a good job raising him to be self sufficient and that while at times he hated me for it, he realized how much better prepared he was for life. Sniff, sniff.

So now here we were, a family, at different season's of our lives, the children budding into young adults and negotiating their life with much less supervision from their parents, Dave and I on our own adventure as "empty nesters" - and we have this "thing" happen. How do we move forward? How do we keep going? What should continue as is and what should change? I have learned in my life that you keep moving forward. Small steps, big steps, it doesn't matter as long as you are indeed moving and it is forward. That is my stable datum if you will. So all my decisions were with that basic premise. It has served me well in the past and it has served me well through this.

I want to take this moment to thank my children, Hudson and Montana, for being there for their Dad and I, for doing so incredibly well in school and continuing to move forward in their lives when they weren't sure if they shouldn't do something else. I am incredibly proud of you and proud to be your mother. Everything I had hoped for you, I have received in spades... and everything from now on is gravy! Continue... Love, Mom

Saturday, March 13, 2010

Dave slept and slept after our trip out to see the house. I was a little concerned he would have trouble sleeping in the night, but he didn't. It was really good for him to be able to rest so thoroughly.

Our wonderful friend Mari sent Dave some of her killer cookies in the mail yesterday! YUM!!

Today I need to boot Dave out of the guest room for a while so I can clean it up and get my stuff packed. It looks like a bomb went off in a rag factory (as my grandmother used to say!). I'm anxious to get home and take care of stuff, but I'm wanting to stay and keep Dave moving forward toward restored health. It is difficult, but we will get through and things are in place to keep Dave moving forward. A BIG part of that is all the wonderful good wishes and messages along with other support that those who are physically close enough to us can offer. Its amazing how folks will rally around and do what they can to lend a hand. I couldn't do this nearly as well without all the support. It touches me deeply.

Dave continued to be frustrated that I was leaving. We have these conversations and I think he understands and everything is set and then bam! These moments of mild hysteria are sometimes, how should I say it... inconvenient.I feel incredible stress and overwhelm at times. I'm just running on pure adrenaline.Don't give me anymore to think about, to talk about, and for god's sake - to do! Dave is having trouble focusing with the pain and the drugs. Then he has pockets and moments of overwhelming dread and fear and worry. Sometimes we are better at reading each other than other times. The onus is mostly on me to do this now. He's not really equipped at the moment to look beyond himself and help me. Every so often he will want a clarification on something that I thought was resolved and I have to fight my own confusion on that and restate everything, without anger or frustration or making him wrong, just state it again calmly and directly. Answer his questions, explain the sequence necessary. I don't think he really understands that I don't want to leave, but we need to keep everything moving so that I can be with him and help him in his journey to get well. I don't know what else to do or how else to BE.

Today we got Dave's meds from the Specialty Pharmacy. When you have highly controlled substances like Thalidomide, it can't be carried or dispensed by a regular pharmacy. Dave has to do an interview each time a prescription is filled.

He put on some street clothes and we decided to high tail it an hour to Elk Grove to look a the new house! I have only seen pictures of the progress. Its almost finished, all the tile and most of the appliances are in (sans the refrigerator!). The painters were finishing up all the painting and the backyard was graded and cleaned up.

From there we headed back to Marysville for another radiation treatment. Dave is holding up very well. Its an hour+ drive each way.

Oh and yes, today, is our 27th Wedding Anniversary. It was not something we really wanted to put a lot of our attention on. We quietly acknowledge it and went about our day. Not much more we could do. It has never been a big deal to celebrate these kind of milestones like they are for others, but it was a bit poignant thinking about it now. Sort of a mushy look at one another and then moving right along...

Moving right along meant me getting ready to leave Dave and go back to Maryland after Hudson arrives on Saturday. I had moved my flight to Sunday so that Dave would have coverage and I could "hat" Hudson on what needed to be taken care of.

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs. So after rescheduling us twice we finally made it over there around 3pm. It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on. But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City. Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream. When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes. It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone! I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit. They make their own ice cream and it is wonderful. It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite. Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this. Its an old story... we take these things for granted. Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way. I don't know... its an interesting and old concept. But I will say, it had a dual meaning for me. I used to go there with my father and thinking of him always makes me smile. Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal. I have found that these "little" things really can recharge me and sustain me. When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den. I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated. It can all be such a mishmash really. But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.It was familiar to me and something to share with Dave.

This Blog

This chronicles our 18 month long treatment experience with cancer, from diagnosis using Dave's Caring Bridge site as my "memory". Feel free to reach me and leave your comments and any questions you have. Like many things such as this, you become a member of a "club" - inspiring, encouraging, supporting and helping each other makes it tolerable and in a very strange way, fulfilling. You have all inspired me to remain optimistic and sane and I owe you so much and I sincerely wish you good luck on your journey.

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Links within my blog

Dave

Treatment

Dave was treated for his Multiple Myeloma at University of Arkansas Medical Sciences (UAMS) in Little Rock, Arkansas, at the Myeloma Institute. We began the week of Thanksgiving 2008 and completed everything September 2009. We are currently on a "maintenance therapy" at home of weekly Velcade infusions, Revlimid (continuous) and Dexamethasone weekly. He has worked full-time throughout.

Dave started in Stage II/III (conflicting opinions) and no organ compromise. He is considered, "low risk" and has no chromosome abnormalities or high risk tumor markers looked for in the gene array. His initial treatment was radiation for pain (lesions on the spine) and Thalidomide/Dex in which he got a VGPR after the 1st cycle. Early on in treatment at LR he was deemed and remains in Complete Remission (CR).